I keep seeing everyones getting mvds can't help feeling like i am getting left behind with the pain Im really happy for everyone...just not sure how long im suposed to hang in there before I try something different My meds have helped some but I'm still in pain everyday....I just want this nightmare to be over
Thanku for messaging me Lee Im so happy for you your surgery was a success. I guess part of the problem is I don't have a good neurologist or any one of the many doctors I saw really seemed like they just wanted to pass me off to someone else. At this point I have been out of work for 8 months...I have no insurance anymore and all the doctors Ive seen cleaned me out of money...I filed for disability in hopes of getting insurance that comes with it so I can seek out someone else have been waiting around for 3 months I got denied last week I can appeal it but it will take another 3 months for another answer. Just feeling tired from the fight. Guess im just feeling kind of stuck. The nortriptyline has def made me feel better then what I was feeling but still I'd rather have no pain. I feel selfish for my thoughts
Hurry and re-apply for disabilty - they always turn down the first time --- try and hold on there and talk to us when you need...... Do you have family/friends supprort near you?
Jstagrl, ((( hugs ))), I understand how you’re feeling, last Fall there was a big group having MVDs and I felt the very same as you…so, you’re not being selfish!
First and foremost, MVDs are no sure thing. And I know there’s been a whole group of us recently getting them done, but each one of us are taking a leap of faith and hoping this will give us long term or some relief. It’s not for everyone, and not everyone has good outcomes.
But we have to try and hope for the best.
Truth be told, there are NO guarantees.
I’ve been through many neurologists and doctors who didn’t even believe I had TN.
I in Canada and I know our health care systems are so different, I don’t really understand how yours works… Can you request a referral to a more knowledgable Neuro to get another opinion?
Definitely appeal for disability.
Take a break first, give yourself a few days to just not fight, advocate, worry etc. it wears us down. It’s so not fair that we not only have to deal with such horrid pain but also have to fight to get adequate treatment.
Once you’re able start your appeal process…it’s worth it.
I keep telling myself, this cannot be my normal, I refuse to accept that! Better days will come again!
Huge (((( hugs )))) to you, Mimi xx
OMgoodness! That’s crazy!
Thanks for enlightening me on that. I don’t know how you all do it!
It’s not like that here at all.
I see my doctor, he puts in the referral, I wait anywhere from 6-12 weeks and there’s no cost involved out of my pocket.
I pay for medical insurance through a plan through my work but that is for prescriptions, acupuncture, massage, dental, eye doctor, etc.
In my province, Alberta, I don’t even pay health care.
That puts a whole different spin on things and STRESS! I understand now…
So unfair!
Hi sweetie,
I feel so bad that your depressed. Don’t be so hard on yourself. We have and alot continue to go thru the same thing. You said the meds help but your in pain everyday. Sounds like that there not working for you anymore. Has surgery been offered to you as an option? I noticed you have been out of work for 8 months, thats awful and I am sure that just adds to your misery. This is a painful enough disorder without adding anything else on top. Keep applying for disabilty, is there someone you can speak to at the Social Security office? Will your doctor back you on your disability. Do you qualify for SSDI? You need to check simce you have no income. i know its easy to say but please seek out someome to talk to do not try to carry this on your own. I hope you can find someone where you are that can help you get some pain relief. Keep us posted.
My best
joanne xo
Right there with you, sweetie! I don't have any wonderful words of encouragement like everyone else. Just thought I would let you know you are not alone.
Oh my gosh thankyou all so much for being there for me you are all so wonderful and amazing!! I am def. going to reappeal my disability case through a consulting company who will help me try to get it. My meds have def been doing quite a bit for me although Im not at max dose and could go higher I have been able to workout now and sometimes hang with friends where before I was bedridden. I do have amazing support from my boyfriend who lives in Virginia is in the military so we are far apart from each other which can be stressful. My parents that I live with just don't understand and are pushing for me to go back to work I have a job offer just so unsure with my pain I would be a good employee. Shindig, Mimi, Karen, Kc, joanne thankyou all so much will def keep ya posted and hope I can be there for all of you too!!
Can you get a part part part time job??? Or some temp jobs that work around your pain....? Jobs for cash?
Although - unless it is for cash - I'm not sure in your state if you can be working AND apply for disability.
I'm glad you have some peeps -- keep checkin in!
Hey jstagrl, you’ve been on my mind all day and I’m glad to see you’ve got some good support. It seems your parents don’t understand and it must be hard having that kind of pressure pushing at you to go out and work when they are the ones you need to depend on right now. Keep working out as much as you are comfortable with because I think it helps with the stress levels.
I also don’t think it’s selfish, reading about all the MVDs, wanting that for yourself. It simply means you care enough for your own present and future to want to be well. You should want that. You should want to thrive. We all have the right to thrive. Sometimes we have to fight for it.
Best of luck with your disability claim. Ask for help with it when you need it. Forms are never very clear- cut.
Hug for you
Bellalarke
Do re-apply for your disability. You must be on disability for 2 years before the Medicare insurance portion kicks in. If you are a good candidate continue to apply. Pick yourself up from your boot straps and try to focus on doing the next thing. My best times are when I am busy so try to kick it all up a notch. We are all struggling. Sorry to hear about your pain.....
Chris
I am so sorry that you are in so much pain. Stress of course can amp up the TN pain but how can you not feel stressed. The group has already offered you great advice. I pray you will find relief for both the pain amd financial stress. Hugs from the prairies
I am so sorry that you are in so much pain. Stress of course can amp up the TN pain but how can you not feel stressed. The group has already offered you great advice. I pray you will find relief for both the pain amd financial stress. Hugs from the prairies
I am right there with you. Come here. The rooms are warm and resourceful. I had Gamma on March 20th. Had a son in the hospital and finished up a root canal that I did not need and Now…yeah I am in hell. This is the second time I have typed this. The other one disappeared into God knows where. Roof of mouth pressure and pain in throat. Fireworks at my right temple ear pain and warm tears that I need to stop producing as they only make thing worse. Lord it feels like someone set my scalp on fire on the right side and then put it out with an ice pick. I am a stones throw from calling the neurologist. Don’t know if I can take hearing that I have to expect a few setbacks. So…I will pray for you. Love to you all. Hi Mimi, so right dear no guarantees.